Tag: arthritis

I could stop the post with just the title. Pick any one of my disabilities/health issues, or any combination, and then realize: not your problem.

I suspect this needs more unpacking, though, because I’ve encountered various forms of resistance. Some people get defensive when I need to take care of myself, and some people want to do too much for me, and some people think “people like me” are dangerous.

So, for the first: If we’re doing something together, whatever that thing may be, and I realize I need to stop doing the thing in order to let my body rest, I will say so and do so. This is not about you. It does not make you a bad person, whether you continue on with said activity or not. It simply means my body needs to rest. Often I can’t walk very far, and I definitely can’t walk very fast most of the time. Sometimes this is a knee/hip problem, sometimes this is an ankle problem, sometimes this is a migraine problem. Whatever the case may be, if I need to stop, I will, and this is about me, not you. It doesn’t mean I think you are a horrible person. I don’t think you ‘made’ me do anything. I simply must listen to my body or face more serious consequences later (and by ‘later,’ I might mean ‘in five minutes’). And in most cases, I will have some form of solitary entertainment with me (phone, book), so I will be fine on my own while you have fun completing the festival/fair/mall/etc. (The exception to this: sexy times, during which I likely won’t have a book {unless we’re reading sexy things to one another?}, and in which case I’m sure we could work something out.)

For the second: There’s a lot I can’t do a lot of the time. Right now I have arthritis in my neck in such a way that using my shoulders/neck can cause a really painful all-day migraine the next day. So I have to be careful. That said, there are things I can do, and I really hate feeling useless. Doing AllTheThings for me because of my potential for pain means I’ll likely end up sitting here feeling like a burden to everyone around me, particularly those who live with me. Let me do things that I feel I can do. If it turns out they cause me pain–then let me find something else I can do. But let me do things! I want to be useful and helpful.

For the third: There’s a lot of stigma surrounding people with mental health issues. We get pigeonholed a lot as dangerous, criminal, etc. However, the vast majority of us really aren’t. For my part, I am every bit as capable of thinking through complex issues and arriving at peaceful solutions as the next person–possibly more so, given the gun- and prison-loving nature of the USA. I’ve graduated at the top of all my classes, including #1 in graduate school. I’m a theologian. I support gun restrictions, Black Lives Matter, police reforms, liberation theology, inclusive and intersectional feminism, womanism, consent culture, inclusive sex education at all ages, mental health awareness and education, ecotheology, RACK and SSC, polyamory…. I support conflict resolution and learning when to walk away. And, while a lot of these things may be ‘dangerous’ to the status quo, they’re not violently dangerous; they’re not criminal. And they do not have a thing to do with my mental health. My mental health status is one part of me, not my totality, and so to label me as a danger purely because of that is to miss all the other things about me.

In sum, my disability/ies is/are not your problem. I’ll take care of me, and I want to be useful, and I’m not a danger. If I need help, I’ll ask. In the meantime, let’s enjoy one another’s company.

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In speaking with my Dominant this week, Spoon Theory came up. Briefly, the idea is that everyone has spoons–healthy people have an unlimited number of spoons and never/rarely have to think about how many spoons/how much energy they have in a given day to do things; chronically ill/mentally ill people have a more limited supply of spoons (and the number can vary slightly, depending on ‘good’ and ‘bad’ days), and so we have to plan accordingly.

My Sir hadn’t heard of Spoon Theory. After reading the article, he came back and asked, “My sweet sub, is your life like this?!”

I tend not to talk overly much with my loved ones–or anyone–about what my experience with chronic illness is like. Partially, I don’t want to be seen as complaining; partially, I don’t want to be a pity case; partially, I want to figure things out on my own.

So, though I’d told him I have migraines and etc, I laid it out for him then: that I have not been able to get out of bed for most of the last year. That leaving my room, let alone my apartment, has been a huge undertaking–I need someone to stand in the bathroom with me when I’m showering in case I fall (my ankle and knee joints are bad), so I have to wait until wife or Zyn are available and plan accordingly, as well as plan around dishes and laundry doing. And I can’t do the laundry with the arthritis in my neck, or put dishes away from the dishwasher, and so often I can’t do either the dishes or the laundry during the day while they’re at work to get them out of the way. And then the actual actions of showering are difficult as well–I usually skip shaving unless there’s a special event. My partners love me as I am, and I’m fortunate to have them.

And I told him that I’d had, until recently, a migraine pretty much every day–and that even now, the preventative does not prevent a migraine due to arthritis, just due to barometric pressure and other triggers. The blood pressure medication is helping, too, but it’s also tiring me out because of when I take it–I have an appointment soon to talk about changing that, but I have to wait, because the medication is tricky to change around.

And the migraine preventative hogs my body’s water supply. I’m a crier, always have been. I’m one of those people who tears up at long distance commercials and sappy movies I’ve seen a dozen times. But now, my tears are thick and difficult. Crying makes my face hurt. I drink lots of extra water, and it helps some–but there’s only so much water a person can drink in a day.

My energy is still low. I’m still trying to reclaim it. Emotional stress takes a huge toll on me and makes me physically hurt. Every stressor adds up. It amazes me to think there are people…that most people don’t hurt every day. To me, hurting is so normal that I feel like I should just be powering through it, even though I often can’t. And of course, that’s a toxic thought pattern that adds a layer of stress that erodes at my spoons.

I don’t ‘look’ sick. I look fat and lazy. I know that. I’m not a lazy person, though I am fat. It’s hard not to be fat with my combination of genetics and illness. It’s harder to get people to understand that if I’m sitting up, or even if I’m walking, I’m not necessarily ‘okay.’ I may just be pushing myself to get the thing done that needs done, because it has to be done.

Often times, I’m found sitting in my computer chair, reading. I have a very active brain, and I read a lot. This has confused some people–even my partners–into thinking that I must be just fine if my brain is processing information. But for me, this is a marker of recovery. Most of the time I spend in bed has been spent with My Little Pony: Friendship Is Magic–because it’s so non-threatening, so friendly, so pastel. Even that has been–as I explained to my Sir–analyzed by my foggy brain. I’m an academic at heart, and I need to engage my brain to feel alive. Reading alone, solitary, in quiet, can help recharge me and get me ready to deal with other things in my life and in my love ones’ lives.

Spoons work a little differently for all of us, I think–but this is what it’s like for me. The more pain I’m in, the fewer spoons I have. And though I’m slowly getting better with my new medications, I’m not fully ‘recovered’ yet–and may never be. I am probably always going to be counting my spoons, and being glad when my loved ones understand that I must allot myself carefully.

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Taking a cue from both TheBloggess and my own life currently, I will address mental and chronic illness and sex and love.

TheBloggess challenged:

HOW HAS MENTAL ILLNESS AFFECTED YOU PERSONALLY? WHAT DID YOU LEARN FROM IT THAT MIGHT HELP OTHERS?

My answers:

I didn’t start to define myself as chronically ill until a couple of months ago. The term floated in and out of my consciousness a few times–my migraines has been worsening over the last few years, to the point that I had more migraines than days without–but I resisted. I’ve done the same with terms like depression and anxiety–embracing them as descriptors sometimes and rejecting them at others.

I deal with depression and anxiety, with migraines, high blood pressure, and early-onset arthritis. Sometimes these things feed into one another. The migraines apparently caused the high blood pressure, which caused more migraines, and so on. Being made to stay in bed upped both my depression and anxiety. I think the arthritis wanted to come hang out with my early gray hair (that showed up in my teens!), but stuck around to pile on with the migraine party (it settled in my neck).

For me, depression has come in waves. There have been points in my life when I’ve been fine. There have been other points when I have been paralyzed, almost, from the inside out. I’m in one of those points now. I find it difficult to actually leave my apartment. I can think about it, I can make plans to do it–but the actual doing terrifies me sometimes. Depression and anxiety lie: they tell me that even my closest friends sneer at me, think terrible things of me, hate me–even though those same friends have never been anything but happy to see me, kind and loving and full of laughter and support. And when I drop one thing, I often feel like I’ve dropped everything–even when that’s not true. It can lead to me dropping everything, though. And that can very easily, very quickly spiral into the deepest, darkest pit.

I’m fortunate that I have the community I do around me. I didn’t realize it when I started building it, but I have been working toward what polyamorous comic KimchiCuddles calls Kitchen Table Poly:

I have a fantastic wife. I have a fantastic boyfriend/Daddy. I have a fantastic lover. My wife has a wonderful girlfriend, and another flirty friend who is dating one of our best friends–someone we consider part of our polycule as a chosen sibling, because we’ve been friends that long and that closely.

I have learned that when the darkest darkness shows up, I not only can but also should call my wife home from work. I have only done that once–but she came, and that was enough, and she held me. I have learned that a cat’s purr is magic, and that it can be recreated online for free. I have learned that crying can be healing, and that sitting in the sunlight–just sitting, even for 20 minutes, even if I’m in my pajamas with my hair unbrushed–really can help. I have learned to just walk away from Facebook, politics, e-mail when they start to overwhelm–and I’ve learned to say when I’m feeling overwhelmed.

Every area of my life has been affected by both my mental and chronic illnesses. Where I used to deal with my depression and social anxiety by talking with people online/having lots of sex online, I have for the past year or two had almost zero energy for either. I’ve had very little social interaction with anyone not living with me, which has severely limited my world. I’m incredibly grateful to the few people who take the time out of their lives to reach out to me on social media or e-mail (though the phone ringing still scares the bejeezus out of me), even when I’m avoiding those platforms for other things. I’m grateful to the people who find me on Skype, who will come find me in my chosen MMO when I have the energy to get into it. I’m thankful for the days I can load the dishwasher, for the patience of my wife and boyfriend/Daddy as I find myself in a really disabled spot, and of my lover as he has to figure me out from a distance.

When I started to get some energy back, I found out that I couldn’t always have online sex with my long-distance lover–because of the arthritis in my neck. Or, more accurately, I could–but it would result in days of pain afterward in my shoulder. Using my dominant arm/hand means pain for days, even for masturbation. My wife, wonder that she is, offered to help in that department, but I pointed out that a) she’s not always home/awake when lover and I might want to play and b) it’s not necessarily fair to all involved to make her be involved in such a way–though it was very sweet of her to offer. This has been a huge adjustment for my lover and I to make. It can be very very frustrating to want and be unable.

I’ve had to learn that for me, right now, solid plans are nearly a no-go. I’ve got plans to get my grandma to see her nephew in another state–something that’s been in the works for years now and needs to happen before she dies (she was diagnosed as terminally ill with cancer a year ago and is somehow, miraculously less cancer-cell-ridden now than she was then, though not cured)–and that’s the most solid plan I have made right now. Everything else is soft, because even with medication, I don’t know when the next migraine will come. The preventative helps–but leaves me exhausted. I can take one that will help kill the pain in 2-4 hours as well once the first signs of migraine show up–but will also leave me nauseated. Choices, choices. Either way, not great for plans. I’m re-learning how to live my life.

I have dreams–dreams that involve being able to hold down a solid schedule. I don’t know if those dreams will have to change. I had hoped to create an interfaith center focused on sexuality and gender, but that seems ever more distant a dream right now. I may need to stick to research, to papers, to hinge on books and independent academia–dicey at best. But then, all academia is a dicey prospect, whether attached to an institution or not.

At the very least, I have options. And I do have hopes, dreams. If I cannot do what I first intended, perhaps I can inspire others in that path. And perhaps I can still do it. Perhaps I will become stronger, I will get out of this current low point, I will strengthen my neck and shoulder somehow, I will find a drug that doesn’t tire/nauseate me, I will find good therapy. My lover will move here, my kitchen table poly will be stronger, my sex life will get better, my boyfriend/Daddy’s arms will always be there, my wife will always hold me. These are the things I hold onto.